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1.
Sci Data ; 5: 180046, 2018 03 20.
Article in English | MEDLINE | ID: mdl-29557977

ABSTRACT

The benefits of data sharing are well-established and an increasing number of policies require that data be shared upon publication of the main study findings. As data sharing becomes the new norm, there is a heightened need for additional resources to drive efficient data reuse. This article describes the development and implementation of the Data and Specimen Hub (DASH) by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) to promote data sharing from NICHD-funded studies and enable researchers to comply with NIH data sharing policies. DASH's flexible architecture is designed to archive diverse data types and formats from NICHD's broad scientific portfolio in a manner that promotes FAIR data sharing principles. Performance of DASH over two years since launch is promising: the number of available studies and data requests are growing; three manuscripts have been published from data reanalysis, all within two years of access. Critical success factors included NICHD leadership commitment, stakeholder engagement and close coordination between the governance body and technical team.


Subject(s)
Databases, Factual , Information Dissemination , Humans , National Institute of Child Health and Human Development (U.S.) , United States
2.
Mt Sinai J Med ; 78(1): 119-25, 2011.
Article in English | MEDLINE | ID: mdl-21259268

ABSTRACT

The National Children's Study will examine the effects of the environment and genetics on the growth, development, and health of children across the United States; it will follow participants from before birth until age 21 years. The goal of the study is to improve the health and well-being of children and contribute to understanding the roles various factors play in health and disease. Findings from the study will be made available as the research progresses, making potential benefits known to the public as soon as possible. A robust pilot study, or Vanguard Study, is underway to generate data for designing the subsequent Main Study. The goals of the Vanguard Study are feasibility, acceptability, and cost, and the goals of the Main Study will be exposure-response relationships and biological, environmental, and genetic interactions. The initial Vanguard Study experience among 7 study centers was successful in many ways, including delineating the topics to explore for the next phase of the Vanguard Study. Three different recruitment strategies are under evaluation to determine what approach to use for the Main Study. The organization of National Children's Study operations is currently based on a new decentralized business model.


Subject(s)
Child Welfare , Child , Child, Preschool , Environmental Exposure , Genetics, Medical , Humans , Infant , Pilot Projects , Research , Research Design , United States
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